Thank you for visiting my blog. This was supposed to be about Breast cancer, and later, my stage 4 breast cancer, but then it became about much more. Healthcare in general, the challenges of parenting disabled children, and also documented the writing of my book, The Special Parent's Handbook. Hopefully you'll find something here that will resonate in some way with you, and if you'd like to read more, particuarly about special needs parenting, please visit my website http://yvonnenewbold.com/

Monday, 7 October 2013

Acceptance with a Big Heart

I'm back. Lots of reasons have kept me from writing for what seems like ages; temperamental laptops, total exhaustion, health news shocks, and loads else. Where do I start? Health news, I suppose. Over the past few weeks I've heard the very best of possible outcomes prognosis-wise, followed moments later by the very worst of outcomes. To be honest I've spent a lot of the past few weeks reeling with shock and trying to get my head around very conflicting information. Yes, I've had moments when I've been lower than ever, then moments when I'm just totally resigned to whatever will happen, then moments of anger at myself about my resigned acceptance, because that just feels like giving up and pointing your toes in the air. Anyhow, it all seems to be OK now, and we're back to that old chestnut with cancer - I might die soon or I might not, but I'm hovering at a comfortable balance at the moment and nothing too dramatic is likely to happen this week or next. They call it stable, whatever that means.Some cancers are fuelled, either totally or partially, by a growth hormone called HER2, and about a decade ago a really exciting new drug was launched, Herceptin, which blocks this HER2 and so the cancer can't grow. My cancer was partially HER2 receptive, so yippee, I got it, the standard treatment of one year, every three weeks via a drip.Then I got even better news. Remember the shock when they told me the cancer had spread to my spine and that meant that it was now incurable, and prognosis was very confusing? Well according to the latest PET scan results, something really absurd had happened - that little dot of spine cancer had actually got a tiny bit smaller!! Double yippee! The doctor explained that there seems to be a very small group of women who seem to react remarkably well to Herceptin, and they think that I'm one of this incredibly lucky group. There have been clinical trials offering certain groups of women Herceptin for longer than the year long treatment, and some are doing so well they've been on it for more than 5 years. They tentatively told me that they are considering leaving me on it for at least another year, and possibly just keeping it going until it doesn't seem to be working any more. However. There is always a "but", and in my case it turned out to be an enormous one.Herceptin blocks HER2 which is great news as far as cancer goes, except your heart also has HER2 receptors, and stopping the HER2 working properly in your heart can cause pretty serious heart damage. I have a heart scan every 3 months to make sure everything is still looking good, and this time it wasn't.So with barely time to draw breath, never mind cartwheel across the consulting room, the lovely doctor had to explain all that too. Talk about giving you something with the left hand and taking it away with the right. If my heart is damaged, it means absolutely no more Herceptin, which almost certainly means premature death.It was six whole weeks of wait and wonder before I was booked into a full day of horrid heart tests at a specialist unit. During this time, they decided I could have one dose of Herceptin, and something really odd happened - just as it started I had a funny turn, and doctors got called, and everything got stopped. My blood pressure was through the roof at 190 over 120, and nothing was looking very good at all. So on top of everything else, they have now put me on beta blockers too.Anyhow, the heart test day was not a good one, lots of needles, lots of horridness, but it was all so worth it in the end. My heart is OK. In fact not just OK, pretty flaming marvellous by the way they were talking. Apparently it's a little bit enlarged which they don't seem to be worried about, but then it's surely much better to have a big heart than a big head. Hope to goodness I don't have both.There has been a stack of other stuff going on too, stressful stuff, funny stuff, sad stuff, happy stuff, but telling all of it would run to a War and Peace length of prose. The kids are all moving on and growing up, far faster than I ever thought would happen, but this is bringing the odd moment of sheer terror too, and it does seem like we are lurching frotvm crisis to crisis almost on a daily basis. I really wish I was the type of person that loses weight with worry - if there was any fairness in the world I've had enough worry of late to be a perfect size 6.One of the things that has happened is that my eldest beautiful, clever, talented, witty, kind caring daughter has taken herself to Italy all by herself for a few months. It happened suddenly, one Friday evening, when she bounded downstairs, leapt onto the sofa and told me she had found herself a new job. To start in a few days. On a beach in Sicily, keeping 5 small children safe on their holiday. Francesca hates beaches, the heat and being in the water. Or at least she always has up until then. Off she went, and I was a total amalgam of fear, pride, pleasure and more fear. Oh and I blubbed for England as her plane flew away. Adam was lovely - he took me in his arms and said "Don't worry Mum, she'll be back home again soon". "Not if she falls in love with an Italian, marries him and has his babies" I wailed. He laughed. "Mum, this is Francesca we're talking about. Who on earth would want to marry her?". Little brothers, eh?! But it did make me laugh.So that's why, last week, WM and I flew off to Rome for 3 days. She has totally fallen in love with Italy, and is now doing an intensive language course just off Piazza Navona. My baby girl, I just had to be with her for her 21st birthday on Wednesday.Fabulous time, fabulous food, and so brilliant to see her and spend loads of time catching up on all the gossip, news, events and just putting the world to right together. It was also really special to spend proper stop-still-and-stare time with WM, who has just been totally rock-solid in his love and support through every moment, good and bad, since this whole cancer chapter began. We stayed at a Hotel overlooking the Trevi Fountain. The views at breakfast were just beyond amazing. Odd though, because although no one knew I had cancer which was fairly liberating, I just felt so old, and tired, and weak for so much of the time, and the walking was so painfully hard, particularly on the cobblestones, that I felt the cancer was there pointing it's finger and laughing at me the whole time. I was last in Rome only 4 years ago, but I felt 200 years older, and I just couldn't do what was effortless before. It's been a bit of a wake-up call. a realisation that this is how it will always be now. More taking on board, assimilating and accepting, but it will be OK. There was a definite upside, though. For the first time in my life, I wasn't a gibbering wreck as the plane took off. It's this whole acceptance malarkey again, whatever will be will be, and potential plane crashes just don't seem nearly as scary anymore.Next time I write, I'll post some lovely photos of Rome, but before the family starve to death, I'm now off to create yet another new dinner with an Italian twist - Shepherd's Bolognaise.

2 comments:

It's so good to have you back my dear friend. I may pop in at the weekend and catch up...but your post has filled in quite a bit. Your positively keeps me going thru my meagre little blips in life. Looking forward to seeing you and WM ...set that dinner date maybe? Xx

Oh it would be so lovely to see you, but I know you've got more than your fair share on your plate too. When we do eventually catch up I think we'll need to chat non-stop for a fortnight! Love to all xxxx

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About Me

I've passed my expected "sell by date" of the prognosis I was given when they found out my cancer had spread & loving every minute of it. Knowing that time may be short has been the catalyst to try & make the world a better place for the next generation of families like mine, those who have disabled children. I wrote a book, "The Special Parent's Handbook", telling it exactly how it is. It has become an Amazon #1 Best Seller, & due to the impact that the book has made I was named by the HSJ as being a "Top 50 Inspirational Women in Healthcare 2014". I'm now writing on healthcare topics, speaking at conferences & seminars & through my series of innovative workshops for parents and staff, people are developing better solutions for some of the issues we face. It's all about getting everyone to work together in partnership, to help every child reach their potential. But it's about a lot more than that too. Its about kindness, compassion, listening to each other, collaborating instead of competing, & putting people at the heart of all decisions. To find out more, please visit my website http://yvonnenewbold.com/ or email me on yvonne@yvonnnenewbold.com. Thank you.